Breast Cancer

Eight ways to prepare for tissue expanders

In 2020, Karyn C. was diagnosed with stage 3A breast cancer. She was treated at Cancer Treatment Centers of America® (CTCA), Phoenix, with 16 rounds of chemotherapy, followed by a bilateral mastectomy and six weeks of daily radiation therapy. Here, Karyn shares the eight ways to prepare ahead of time.

  1. Brace yourself for the emotional impact. Getting a bilateral mastectomy was absolutely the most difficult decision I made throughout my entire recovery, and it was a big one. The decision is so intimately personal. Ask your care team every question imaginable. Research. Ask more questions. Rinse, repeat until you feel comfortable moving forward.
  2. Don’t assume all the changes will be unwelcome. Everyone’s experience is personal, but I was OK with a pair of smaller boobs after my bilateral mastectomy. For me, It was like I didn’t lose them at all. In fact, I was happy to wake up and find them where they used to be, 30 years ago! I cannot tell you how much that did for my self-esteem and mental attitude. Again, it’s all personal, and you have to make your own decisions. Consider all your options. Talk to other people who have undergone the same procedure. Connect with your care team.
  3. Tell your care team if you’re in pain after surgery. My doctors made sure I had no pain for the first few days, and it was magical. But what happens when the initial meds wear off? There is pain, but it doesn’t last. For me, it felt similar to the kind of back pain you get when you overstretch your muscles, with some back spasms more than anything else. My pain management doctor was amazing!
  4. Prepare for the pain from the expansion. I don’t know about you, but I was taking my muscle relaxer for 18 to 36 hours after every expansion, to help me get comfortable and sleep. For someone as med-adverse as I am, that’s saying something. Medication and pain management are very personal, but remember to lean on your care team to help keep you comfortable. Your care team is there to help.
  5. Know the expansion itself may feel weird. A couple weeks after your mastectomy, your tissue will start expanding. Here’s how I’d describe it: You basically have an under-muscle prosthetic in your body, and in my brain, it’s shaped like a balance ball for cardio/yoga—flat on the back (so it doesn’t flip over), and convex on the surface. It felt like having coconut shells tacked to my body, except they’re under the skin. However, because the nerves were cut for my bilateral mastectomy, I couldn’t feel them. That’s the weirdest part of all. My hands can feel the expanders under my skin, but my skin on top of the expanders is non-responsive—warm, but it doesn’t know I’m touching it. It’s very weird, but don’t worry if this is your experience too. Many of us feel the same way.
  6. Phantom nipples are a thing. I wasn’t able to have nipple-sparing surgery, because of where some of my cancer was located. I was in the living room one night when the air conditioner came on, and I got nipply! Except–  have no nipples left. It’s in my brain.  Recognize that it’s OK if this happens to you. For me, I’ll have that particular memory for the rest of my life and choose to laugh about it.
  7. There may be a learning curve with daily activities. I call my expanders the Iron Maidens, because they poke my friends when I hug them. My hubby calls them “kick-stands,” because I’m a side sleeper who can no longer sleep comfortably on my side. Prior to my surgery, I slept on my side every night. I swear I can count on my fingers the number of times I’ve slept without my wedge pillow since the surgery, because the “kickstands” get in the way. They aren’t squishy or cozy; it’s more like having football helmets implanted in your chest that don’t move. So, since the bilateral mastectomy, I’ve slept on my back, on my wedge or at a ridiculous 45-degree angle wedged up on my side with pillows. It took five months to even consider the side angle. Remember: Healing takes time. It’s OK!
  8. Don’t be afraid of the expanders. They’re meant to prepare your body for what lies ahead–especially if you undergo radiation therapy. Be true to yourself throughout the entire process, and you can’t go wrong.